Two Truths and a Lie: My Allergy Journey

“I am allergic to eggs and tree nuts.” I have practiced saying this sentence every day since I was able to speak. It has always been a part of my identity; I use it in two truths and a lie, saying, “I am allergic to eggs, I’m vegetarian, and I love ice cream,” and everyone, including adults, always picks that as the lie, because how could a kid not be able to eat baked goods? I would always hear, “I could never live with allergies; that sucks!” But I do live with allergies, and hearing that it’s a burden coaches me to believe that it is.

My college journey had a challenging start. I had my confidence shaken by my first anaphylactic allergic reaction that led to hospitalization only a year before, and I was still on my route to recovery. People don’t talk about how hard it is to regain trust in food, and particularly other people’s cooking, but I was so excited to attend college at my dream school, Bryn Mawr College. It was an adjustment to move several states away from my family, rebuild my community, and live on my own, but I was expecting that. After only a few weeks at school, I started to struggle in the dining halls. My throat and mouth were always itchy after eating, and I couldn’t figure out what was happening, but it was scary. I wasn’t sure how far the reactions would progress because I wasn’t sure what I was reacting to. One day, I had a reaction to egg pasta that was mislabelled. The next, all I had was a cucumber and apple for breakfast, and I walked out of the dining hall with an itchy mouth and swollen tongue, thinking I needed to go to the hospital. Before college, I’d had fewer than ten allergic reactions, and in the span of a month at college, I’d had more than five. I didn’t think I was this sensitive to cross-contact, so I went to the allergist. I received a new diagnosis of oral allergy syndrome (OAS).

According to the American Academy of Allergy, Asthma, and Immunology, “OAS is a form of a contact allergic reaction that occurs upon contact of the mouth and throat with raw fruits or vegetables.” I’ve never been a foodie, perhaps as an escape mechanism to feel like I was never missing out on that much, but raw fruits and vegetables have always been my safe foods. And yet, I’d had hospital visit after hospital visit for OAS. Moving forward, I was still allowed to eat them, but I didn’t trust myself to identify whether it was something I needed to take more seriously if I was eating in the dining hall.

Winter break was a breath of fresh air. I was so relieved to have familiar foods, easy access to the grocery store, and my mother to cook for me. However, when I returned to school, I found my systems fall apart further as many of the dining hall recipes had changed. 

The school switched brands and, with that, they switched ingredients. The pizza and garlic knots that I had relied on for most of my carbs were no longer safe with a new “may contain egg” label. I was devastated. I reached out to the college asking for more support, and they gave me access to “grocery shop” their ingredients from their back shelves. That mostly meant raw fruits and vegetables, which I was having consistent reactions to, because I had no way to cook for myself in the dorms.

The next accommodation came and went: pre-prepared meals. They were bland, with limited ingredient options and no seasonings, and had to be ordered at least 24 hours in advance for a specific pickup time. They were safe, but inconvenient and made eating feel like a chore.

Spring break arrived, and I decided to go on my college’s Ultimate Frisbee trip to Myrtle Beach for a tournament. I was so excited. We put 38 people in one beach house with 5 bedrooms and had a rotating crew that cooked dinner for everyone each night. They banned nuts from the house since there were several of us with nut allergies, but eggs were present. I was wary, but I happily ate what was cooked for me, especially because I trusted the head cook of night one. I had three great days of eating and playing ultimate frisbee, then Tuesday night came, and the cooks made tacos and quesadillas. I was so excited for the homemade guacamole and to have a filling dinner after a long day of being physically active in the hot sun (it was the first day of the tournament!). Even though they are usually safe foods for me, about five minutes after I started eating, I felt the familiar throat tingle.

When I was little, I would describe it as “my throat feels fuzzy.” I tried to breathe through it, but my oral allergy symptoms never started with my throat; they always started with my tongue or the roof of my mouth. My throat tingling is a symptom I associate with the more severe allergic reactions I had as a kid. At the house, I slipped away to the bedroom I shared with four other girls to take an antihistamine. About five minutes later, one of the girls who also has food allergies came in to check on me. I told her what was happening, and she sat with me while I decided to take a nap and see if it went away. I was still trying to convince myself that it was OAS. I woke up an hour later, and it was much worse and continuing to progress. At that point, I called my mom and took even more antihistamines. My throat continued to tingle and started to tighten, but I waited another 20 minutes to see if the second round of antihistamines would have any effect. It didn’t. This is when I should have epipenned, but I didn’t. I thought that antihistamines were the cure. Epi first, Epi fast, is something I learned about after this reaction. I told my friend that I needed to go to the ER, and immediately she got someone to drive us. The doctors initially decided to give me a steroid and then wait and see if it progressed or got better, but it continued to progress. They put in an IV, gave me intravenous Benadryl, an EpiPen, and intravenous steroids. It was terrifying, and I didn’t even know what I had reacted to, because my food should have been safe.

Suffice it to say, I cooked for myself on new cookware for the rest of the trip.

Returning to school was difficult because my confidence had been shaken even further. I slowly reintroduced the foods that I had eaten that night, and none of them triggered a reaction. I was mostly cooking for myself at this point, but struggled to make anything substantial living in the dorms. Eating was hard and quickly became something that I dreaded. I had several more reactions that semester to the dining hall food.

Summer break came, and I was still reacting this way to food. I dreaded every meal and was terrified of eating outside of my house. Giving anyone else control was too hard. I had panic attacks at restaurants that even mentioned nuts on the menu. I restricted my safe foods to labels that had no hint of cross-contact, and food that I always knew was safe for my body was no longer safe in my mind. Towards the end of the summer, I was so restricted that I was only eating berries, cooked vegetables, pasta, and Made Good products, which are made in a top nine allergen-free facility. I was trying not to let my allergies limit my life, so at the beginning of August I ran my first half marathon, but I struggled a lot from underfueling my body.

My allergist then recommended I try Xolair, and after several months my oral allergy symptoms dissipated, but it was not enough. I returned to school, and my nutrition continued to decline. The dining hall felt like it had fewer and fewer options, and the new accommodation—letting me use the GF/allergy aware room—was not helping, as there were nuts everywhere. I found myself eating bananas and rice for every meal. I was nauseous all the time and had a panic attack every night thinking about how I would have to eat three meals the next day. Fall break was a small relief, but I was still so restricted.

November was hard. The administration was not helping me, and I could not continue to “cook” all of my meals in a dorm microwave. My parents came up to cook for me while we tried to figure out a solution for the next semester, and I decided that I was not going to let the lack of accommodation from my college prevent me from succeeding at the school I so desperately wanted to attend. I decided to move off campus so I could cook my own food. I was afraid to eat. I needed control over my food to be able to heal my body, my mind, and my relationship with food.

At Bryn Mawr College, approximately 90% of students live on campus all four years, and you have to get released from the residency requirement to move off campus. I found a roommate and an apartment next to campus, and then I went to residence services after spending the year and a half prior working with dining services and not coming to an adequate solution.

I moved off campus in the middle of my sophomore year and was immediately isolated from my peers in a new way. I was entering a new stage of life where I was responsible for remembering to pay rent, utilities, and manage my own home. I had to find time to cook all of my meals, create a work-life balance, and ensure that I was home in time to do all of the house chores every day. I felt left out a lot because my friends were all spending time together at meals. I didn’t realize how much food brings people together until I couldn’t participate, even if it was in a place where I couldn’t eat. I tried to cook my meals and join them at the dining hall, but that quickly became too much to manage.

I taught myself to cook and invited friends over for weekly dinners where we bonded over cooking intricate dishes. We’ve tried homemade dumplings, making the wrappers from scratch, and had many cooking fails where we ended up boiling pasta to replace the burned attempts at personal pizzas. As I got more comfortable eating a variety of foods in my own space, I started to try eating at restaurants again. I tried breads with cross-contamination risks that I had never been given as a kid because I began to trust that Xolair was helping. Each safe experience gave me more trust in others, but also in myself. It was the lack of trust in my ability to keep myself safe that led to me fearing everyone else. I blamed myself for not checking the label before eating the pecan bread in high school that led to my first anaphylactic reaction, and I slowly fell apart once my mother was not the one in charge of my food. 

During these past few years, I’ve often wished to be 6 years old again, when I only had to remember to tell the adults that I had food allergies, when my mom would bring safe snacks, and she would check all the labels for me. It was easier back then. But I am grateful for the experiences I’ve had. The challenges I faced these past few years proved that I can do hard things. I can accommodate my own needs when others won’t; I can overcome adversity, and I can stand up for myself because I have had to for my entire adult life.

Finding joy in food was hard for me, but as I learned to surround myself with people who accommodate my needs instead of pitying my condition, I found that it was not the food I found hard. Since moving into my apartment, I’ve learned to love food again. I’ve learned to be an “adult” while still in college with my parents’ support. It took a lot of work to be where I am now, but I am so excited to be where I am and to have the opportunities that my food allergies have given me. I am confident in my ability to cook for myself, advocate for myself, and live on my own. I never want my food allergies to define me, but they have given me the tools to advocate for myself. I know how to say no: no to unsafe food, no to situations I don’t want to be in, and no to services I don’t want to provide. I know to trust my intuition, but not let myself be overly cautious. My gut reaction is enough, and I can trust it without second guessing. I know how to ask for and accept help because sometimes I need a break, and a trusted friend or parent can advocate on my behalf. I feel the urge to confidently say: “I am allergic to eggs, I am good at saying no, and I love ice cream.” I still don’t like ice cream.